08/20/2026
Women - be careful of OB/gyns who continue to maintain that birth control or lupron is all you need.
If you are symptomatic of endo - the bare minimum is offering a referral to excision specialist to start the conversation/discuss candidacy. Not offering this as an option to symptomatic women is a problem
How long would this have gone missed? How damaged would my kidneys have been before that became symptomatic enough for me to go to the ER again? How many more ER visits for pain would have gotten someoneās attention to offer more than just the pill or Lupron?
I share my endo story as I know there are millions of undiagnosed & untreated women out there. It takes on average 9 years to get diagnosed!
My CIRS Iāve talked about for years was missed too - I beat down doors to get it diagnosed & it took getting certified myself as a Shoemaker proficiency partner to learn enough & then find a $ pay doctor I could afford for formal diagnosis
My Lyme disease was missed too for over a year from the time of the bite because the initial ELISA was negative - I beat down doors to get it diagnosed & kept asking questions
Now D.I.E. was missed but found with my persistence - and I had to beat down doors to get this consult (I have an HMO plan now) and surgery scheduled too. Ive brought up my symptoms to the 8 different OB/GYNs groups Iāve been a patient at since age 18. Seven of the practices said I didnāt need surgery - only one doctor said maybeā¦and my most recent one I flat out told I was just going to go for it on my own and actually had to get the P*P to place the referral after calling the excision surgeonās office and they placed the MRI for me to nudge the P*P to sign off on referralā¦
The HOOPS western medicine makes women jump through is insane, the dismissive care is insane, the not believing women is insane! & Iām clinical & I had to fight this hard.
Iām not assigning blame to 1 thing for my story - there are so many layers to it.
I alone canāt fix broken healthcare. All I can do is share my story & resources to try to empower women to speak up & keep advocating for themselves š«¶š»